Finding out about your treatment options
How much information you need to help you make a decision is up to you. Some people want to find out as much as they can about each option while others prefer to know just a little.
We can’t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. If you have any further questions, you can ask your doctor or nurse at the hospital where you’re having your treatment.
Before you make a decision about treatment, it’s useful to know about your cancer and how it’s affecting you. Your medical team – the doctors and specialist nurses who are treating you – will be able to give you information about the type of cancer you have. This will help you understand your treatment options and make sense of other information you may find.
Your medical team can tell you:
where in the body the cancer started, such as the breast, bowel or prostate
the size of the cancer and whether it has begun to spread to other parts of the body – its stage
what type of cancer it is – whether it’s a carcinoma, sarcoma or lymphoma, for example
how fast growing the cancer may be – its grade.
As a general guide, it can help to know about the different aspects of the treatment options you have been offered. Knowing what each treatment involves and how it differs from others may help you make an informed decision about which you’d prefer. It’s useful to know:
the aims of the treatment
how effective the treatment may be
whether one treatment is more effective than another
possible side effects
how the treatment will be given and how it may affect your day-to-day life
if there are other treatment options that you haven’t been offered
what your doctor or specialist nurses recommend.
You may be able to get all the information you need from your medical team. As well as talking to you about the cancer and its treatment, they should be able to answer your questions and may give you some written information that you can take home.
You may find that this is all you need and you’ll want to get on with the treatment. Or you may need to get more information before making a decision.
If you’ve only recently been told that you have cancer or if it has come back after previous treatment, it can be difficult to focus on what you need to know. At first you may feel that there’s too much information to take in. This may make you feel more confused or overwhelmed rather than help you make a decision.
Depending on your situation and what you’re looking for, you may also find that some information you hear or read is upsetting. This can be difficult to cope with at a time when you may already be feeling emotional and vulnerable. It may help to discuss it with someone, such as your doctor or nurse, a counsellor or a good friend. You may also find it helpful to talk to one of our cancer support specialists.
What further information do you need?
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Before you begin to look for further information, try to decide exactly what you want to know. What would help you decide between the treatment options you’ve been offered? Do you need more medical information, or do you want to know more about the side effects and the practical aspects of the treatment?
You may find it helpful to write down any questions you have. This can help you focus on the most useful information for you. After you’ve done some research you can look back at your questions to see if they’ve been answered or if you need more information. This will help you know when to stop searching.
Reliable sources of information
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There are many ways to get information about the treatment options you’ve been offered. It’s a good idea to use information that comes from reliable sources so that you can be sure the information is accurate and up to date. You can find reliable information to help you from:
your healthcare team
cancer information organisations
Your healthcare team
Your doctors and nurses are a good source of information because they know the details of your situation. They should be able to tell you about all aspects of the treatment options you’ve been offered – including the aims of the treatment and how it may affect you. It’s a good idea to think about questions to ask them, such as those listed in the Making your treatment decision information. They can also help you understand other information you may have found – such as results from cancer research trials – and how this relates to your situation.
Other members of your healthcare team, such as a pharmacist, therapy radiographer (who gives radiotherapy) or cancer information specialist, can give you information.
You may also want to think about taking someone, such as a relative or good friend, with you to your hospital appointments.
Cancer information organisations
There are many cancer information organisations and charities, like Macmillan Cancer Support, that can provide information or help you understand the information that you already have. Some cover all types of cancer while others deal with specific cancers, such as breast cancer or prostate cancer.
Many employ specialist nurses and some also use volunteers who have experience with cancer. They can often answer your questions and give you detailed information to help you. Charities may also have written information they can send you, and most will have a website.
The internet can be a valuable source of information, and many people use it to search for health information. It contains an enormous amount of information, is available 24 hours a day and is mostly free. However, it’s important to make sure that any online information you use has come from a reliable source.
Some websites will have logos, such as The Information Standard’s quality mark seen on Macmillan’s information, to show that they have been certified as providers of high-quality, up-to-date information. To help you to check if the website is reliable you should ask the following questions:
Is the information regularly updated?
Check when the information was last reviewed to make sure that it’s still accurate.
Is the information referenced?
The site should list its sources of information.
Is it is clear who has written the information?
A good site should tell you about the organisation that has put the site together or written the information.
Is the site sponsored by a company?
This may mean the information is biased towards that company’s product or services.
Is the site trying to sell you something?
A good information site won’t do that.
If you’re new to the internet, it’s a good idea to get someone else to help you. Family members, friends or staff in your local library should be able to assist you. Some hospitals have cancer information and support centres where you can use the internet, and someone should be available to help you.
The internet has so much information that it can be a bit daunting at first. When using a search engine (such as Google or Yahoo), try to be specific and refine your search to exactly what you’re looking for.
Sometimes it can help to get information from people who have been through the same treatment. You could do this at a local support group or perhaps through an online community or forum. Macmillan has a very active online community that you can find at macmillan.org.uk/community Your doctor or specialist nurse may also be able to put you in contact with other people. Our cancer support specialists can give you details of local support groups and other internet communities and forums.
Remember that everyone’s situation is different so other people won’t be able to tell you which treatment will be more effective for you or exactly what side effects you’ll get – only your doctor or nurse can really answer those questions. But they can say what it was like to have the treatment, how they felt and what helped them cope with any side effects.
Getting help finding more information
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You could ask family members and friends to help you find out about different aspects of treatment so that you don’t have to search for everything.
Make sure that they know exactly what you’re looking for. For example, if you’re more concerned about potential side effects or about the possible success of one treatment compared to another, make sure that they know this. It will help them look for the information that’s most useful to you.
Ask them to make a summary of the information they find, picking out the main points. That’ll make sure you don’t end up with lots of pages to read through yourself.
Other treatment options
While doing your research, you may read about a treatment that you haven’t been offered. This may be because it’s a very new treatment that’s still being evaluated and is only available in a research trial. Or it may be that your hospital doesn’t offer that particular treatment or that it’s not available on the NHS.
If you learn about a treatment that you haven’t been offered but would like to consider, you can discuss it with your cancer specialist. They can tell you whether it’s an option for you and, if so, how to go about getting it. This may mean that you’ll need to be referred for a second opinion or to a private hospital, which may cause a delay in starting your treatment.
Who can help you make your treatment decision?
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When it comes to making a decision, talking can help clarify your thoughts and feelings. You may have a specialist or research nurse at the hospital you can discuss things with. You can also speak with one of our cancer support specialists.
Some people find it helps to talk things through with their family or friends, especially if they have experienced cancer themselves. Remember that every person, and every cancer, is unique and what may have been the right choice for them may not be the best thing for you. Always check with your medical team if you have any doubts about information you have been given.
Sometimes an online forum or support group may be helpful. You may be able to learn more from other people’s experiences. Macmillan has a very active online community.